How did you meet each other?
My friend was going out with a girl who worked at a shoe shop. One day he asked me to meet him at the shoe shop. I waited outside for him and then the other girl who worked at the shop was sent out. She had been told that there was someone outside who wanted to meet her. That’s how we met and we’ve been together ever since. We became soulmates.
That’s cool. You met her when she was working at a shoe store and you became sole-mates.
He’s been telling me off, he’s never done that to me before in all of our time together. He was grumpy and demanding. He wanted to get up and wanted me to lift him up. I can’t do that I’d hurt my back, he’s too heavy. I’m worried he’s going to fall over. He just won’t listen to reason.
Yes, I’ve noticed a big change. He was joking with us just the other day, now I can’t connect with him at all. I want you to know that he is talking strangely and it is out of his control. I don’t want you to take what he says to heart. It’s the illness talking not him.
Is it the medication change from yesterday?
I don’t think so. I think it probably is his cancer getting worse and making his liver fail. We’ll change his medication to see if it will make a difference, but it might not improve his condition.
A doctor friend told us that when people get closer to dying they become confused. Is that what is happening?
Yes, your friend is correct, that is something we see in our patients as they get closer to dying.
How long do you think he has left? Weeks?
I think he might at most have weeks. With the changes we’ve seen so far I would guess he only had days to weeks left to live. Things can change much faster as we approach the finishing line. He might have much less time than weeks left.
Our older son is taking me to the funeral director to make arrangements. My younger son is coming over but I’m not sure if he can handle looking after Dad. I’ve asked a nurse friend to come over to support my son.
That’s a good idea. I’m going to change your husband’s medications now, to see if we can get him thinking more clearly. His thinking may or may not clear up, no matter what happens.
I was in my office and I heard the sound of people crying including children. I wasn’t sure which direction it came from, was it in front of me or behind me? The young mother or the older mother? Or was it the grandmother? Three ladies who were all dying in our hospice, had all outlived their prognoses. Prognostication is our best attempt at an educated guess, we are often wrong. That was the case with our three ladies, they were holding on, doing things in their own time. Who had just died?
Listening more closely, there seemed to be many different cries. This ruled out the grandmother who did not have a large family. The other two families were larger. Was it the mother of two or the mother of five? Both patients and their families had spent the last months in and out of our hospice inpatient unit. Both families had initially resisted coming into hospice due to fear of the unknown. After spending weeks with us both families had also been nervous and reluctant about taking their loved one home. They had become scared of leaving a place where they felt safe. Both ladies had successfully made it back home and had spent long periods at home.
When each lady returned it had been in similar circumstances, a deterioration in overall condition, with confusion and agitation prominent. Husbands were stressed out, as they had to take over the running of their homes. Their wives had previously run their households, now the husbands had to take over and they found the job to be harder than going to work. So much to do in so little time, dropping off the kids at their schools and picking them up afterwards. Household chores wouldn’t take care of themselves. They wanted to give it a go before evaluating the need for home support.
I was still unsure, I would have to venture out of my office to get more information.
“This will be a challenge,” was my first impression when I first met the son. His eyes were on the brim of tears, his gritted teeth, I could see he was having a hard time. Our staff had told me that our patient, the mother, had deteriorated steadily during her short admission. Ongoing changes over days meant at the most only days left to live. The staff had also told me that the family were keen on our patient having further treatment for her cancer. They had been trying to feed her more as they believed that if she ate more she would be able to fight her cancer more. She had come in because of worsening nausea and appetite. They were so intent on her getting treatment, that there was a huge mismatch between their goals and our patient’s reality.
As I walked into the room and saw our patient for the first time I thought she looked terrible. Like she she could die at any time. There was a lot of distress in the room. The husband was crying disconsolately while holding her hands. The children and their spouses witnessed this in distress. The gathered grandchildren amplified the distress of the two elder generations. The room went quiet as I examined our patient. Weak thready pulse, hands and feet becoming cooler to touch. She didn’t respond to my voice or when I examined her. Her ragged, wet-sounding breaths were made louder by the intense silence of the room. It was as if everyone was holding their breath, myself included. I finished my examination and took my time coming to a diagnosis. I asked if I could sit down on the spare bed before I addressed the whole family.
“I’m worried about your mother. I think she is getting worse. I think her time is getting shorter, and she doesn’t have long to live.” Tears and sobbing around the room. Nodding indicated surprisingly dawning acceptance. “I know that you wanted your mother to have more treatments. I think if she had chemotherapy it would not make things better, but would make her feel worse, and might shorten her time even more.” “I’m sorry, I wish we could do more for her. The best we can do is to keep her comfortable, to calm down her distress.
They handled the bad news well, “please keep her comfortable.”
I was asked by a colleague why the family couldn’t let her go and wanted her to keep on going with treatments. I replied, “It’s because they love her so much. They just don’t want to lose her. Up until two months ago, she had been well, and then she wasn’t. Now she’s dying.”
The counsellor stayed behind to support the family. She arranged for the husband to have some private time with his wife. He said to her, “I’m going to be okay, I will be looked after by our children and grandchildren. I love you. Do what you need to my dear.”
She died 60 minutes later.
You didn’t have a good night?
I couldn’t fall asleep, I can’t remember the first part of the night. Then I had pain, they gave me pain relief and it helped. Then I slept for a few hours.
My staff told me you had trouble swallowing your medications.
Yeah, it took a while but I was able to take my morning pain medication. It was good they changed the other medications to liquids.
I don’t want you to end up in pain if you can’t swallow your medications. I’m going to switch your medications to injections so you’ll be able to get all your medications without needing to swallow them.
Okay.
Have you had nausea?
I did but it was okay after the medication they gave me.
My team said that you wanted to talk about assisted dying. Do you want to talk about it with me?
Yes, please.
I need to tell you what your situation is. Do you want to know how much time I think you have left?
Please tell me everything.
I’m worried about you. I think things are changing fast. If changes occur over months, a person might have months left to live. If changes occur over weeks, they might only have weeks left to live. I’m worried because changes have been occurring over the last few days, which makes me think you might only have days to short weeks left to live.
Oh?
I don’t think you have enough time to go through the assisted dying assessment process which usually takes at least a week or two. I don’t want to waste your precious time doing something that isn’t going to help you.
Thank you.
Do you have any questions you want to ask me?
No, you’ve covered it all well.
Okay, I’m going to change your medications now. Hopefully, you’ll be more comfortable soon, before your kids come in. I’ll see you later.
Thanks, see you later.
You are the driver, not me.
You’re in charge.
I’m just here to help you.
Think of me as your GPS.
I’m here to guide you.
To try to make your journey as smooth as possible.
I’m going to show you what is up ahead of you.
I’ll do my best to anticipate the dangers or obstacles to come.
I’m going to present you with options.
I will make my recommendations but it is up to you which path you want to take.
I will listen to you, so please tell me what you want, what you need.
I will help you get through this journey, and your family too.
You’re the driver.
It’s all about you, not me.
Our worst suspicions were confirmed by the virtual clinic appointment. The bad news that we had expected had eventuated. No further treatments were available because of progressive disease. The news caused her to shut down and to shut down our attempts at communication. She became quiet and wanted to sleep more. She seemed to be distancing herself from the world. She didn’t want to see her baby. It was as if she had given up on life.
How long she had left to live was uncertain. We thought it could be as short as weeks, but it could be much shorter or longer depending on her frame of mind. Had all her hope been taken away? As cancer grows the problems it causes usually worsen. Pain increases, energy decreases, and fear can balloon. What was the right thing to do? To encourage her to live whatever life she had left? We thought she still had things to live for, especially her baby. What did she think? For some patients dying as soon as possible may spare them from too much suffering.
We needed to check with her what she wanted. We needed to find a way to ask her, but first, we needed to re-establish our connection with her. She asked for us all not to come in and we respected her wish. She allowed us to talk to her family as she did not want to break the bad news to them herself. We would try to talk to her more during the weekend when there would be much fewer staff members around.
Increasing doses of pain relief had not eased his pain. He was becoming confused and sleepy. The decision was made to admit him, there was a lot to sort out. His main caregiver was his wife and she was exhausted. Neither of them had slept for days. His medication list was like a pharmacy textbook and included members of almost every medication category. Many medications had sedating side effects. Polypharmacy – One man, 25 medications. We started to remove as many medications as possible.
We took away one medication per day over the next weeks. If there were no ill effects we would remove the next one, and the next one. His liver enzymes had been working overtime for many years. Medications had been started to treat the side effects of other medications. Older medications which were not working for his condition had been continued for a long time, as he had always been on them. We trimmed his list down as much as we could, removing ten items. We needed to be able to justify every medication that we kept on his list. Slowly but surely he resurfaced. He was able to sleep at night and be awake during the day. At the same time, we worked on his pain.
There were several different pains in various joints of his body. It had started almost ten years ago, and it had taken years for him to be diagnosed with an illness which caused multiple joint pains. The pain was never fully controlled, it became a chronic pain case and he had been referred by his chronic pain specialist for pain control. We searched all of his electronic medical records but could not find a life-limiting illness, he did not fit into our referral criteria. He had terrible pain but was not dying of anything. (I believe that chronic pain doesn’t just shorten quality of life but likely quantity as well.) He had been living with his physical suffering for almost a decade. I suspected that he had suffered from non-physical pain for much longer following a harrowing loss over four decades ago, that he couldn’t talk about. I’m not sure he had ever dealt with his grief, and instead poured himself into the work of helping others. We continued to work on his pain and over the next weeks we had brought it mostly under control.
The pain would still flare up at times but overall was better controlled. His medication list had had dramatic weight loss. We began to make discharge plans. His family told us that his wife had health issues of her own, and they worried about the elderly couple and how well they coped looking after each other. With the family’s input, we made plans to transfer him to a long-term care facility. It had been a successful admission and we discharged him from our unit. As he had no other specialist palliative care needs we discharged him from our service back to the care of the chronic pain team and his general practitioner. The couple showed their appreciation with many hugs as we said goodbye to them.
I make an effort to greet patients in their own language as often as I can. Over the years I have learned many different greetings. Some of them are used frequently and I can now pronounce them fluently. Others are used more rarely but a thirty-second internet search can provide me with enough information to say hello. A small effort on my part but a clear statement that I am trying to understand the other person and where they are from. You may be thinking, “So what, what effect does it have?”
I was meeting our patient for the first time. I had been away and the rest of the team had gotten to know her over the past weeks. They all said hello to her and she said hello back with a small smile. It was my turn and I said to her, “Malo e lei lei.” Astonishment swept across her face before her eyes and her face lit up in a sunburst of a smile.
“You know my language?”
“Just a little bit.”
“Oh thank you so much, it was so nice to hear.”
The rest of the conversation went well, rapport was established when I spoke those four words of greeting in her native tongue. The pronunciation doesn’t have to be perfect, it’s the effort expended in trying to use their language that is appreciated. Later in the conversation, I used the word for pain, “mamahi,” and her huge smile was back again.
My late mother had lived in New Zealand for over five decades and spoke English every day in her work life as a shopkeeper. During her hospital admission, she was looked after by a Chinese-speaking nurse and it made such a difference. She felt understood not just linguistically but culturally. She felt safer.
Let’s all make an effort to help our patients feel safer when under our care, even a few words can make a difference.
Her pyjama pants were brightly coloured. They had repeated patterns printed on them. I didn’t have my glasses on and I had walk closer towards her to see what they actually were. The fuzzy, blurry lines sharpened. The shapes were dogs, lots of different breeds. Each of the dogs was holding an item of food. It reminded me of one of my own favourite work items. My hooded neck pillow with pictures of all the health food groups. French fries, hot dogs, pizzas, hamburgers and more. The greasier the better. Guaranteed to line your arteries within minutes of ingestion. I promised to visit again.
We hadn’t seen each other for many months. Things had not gone so smoothly the last time we had met. We had both changed. Lives had carried on. Holidays had been spent in distant locales. We had both ventured away from the familiar comforts of home. We had both talked in front of many different audiences. I had a two week break from work. Two weeks ago she had taken her final break from work. I had started exercising more and having more fights (Brazilian Jiu Jitsu). She had become less active and had given up on her fight. My life was becoming busier. Her life was slowing down. My world continues to expand as her world shrinks down.
We weren’t sure if we would meet again but here we are. I will try my best to make her more comfortable. We both know that her time is running out. We will try to make the most of the time she has left. I will make changes to her medications to try and relieve her suffering. I can’t take away her existential suffering. I cannot make whole what is falling apart at her centre. She could handle all the changes but the illness has made her mouth shrink, her dentures don’t fit any more, and she can’t smile her usual smile. That’s what hurts, that she can’t be who she always has been. She doesn’t feel like herself any more. I know she is an actor and I told her she doesn’t need to act in front of me. I need to know what is really going on in order to help her. I need her to be herself. Her deteriorating self. She can accept that death is approaching. What’s difficult is the dying process.
Grief doesn’t just occur when someone dies, it starts much sooner than that. People grieve as soon as they start losing things. Having to let go of something you have pursued with passion for a life time. Having to say goodbye to a job that was a vocation. Having to handover the mission to someone else. The school would never be the same again, but she wants it to move on without her. To keep on growing and developing young people. Igniting the spark of self-discovery. Feeding the nascent self-confidence. Inspiring youth to aim for the stars. To believe in themselves, to push themselves, to become somebody. “If you want to be a teacher, you have to love kids.” No-one loved the kids more than she did. And look where they have ended up. Starring in shows of their own. All because one of their high school teachers believed in them, twenty years ago. I can think of worse legacies to leave behind.
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